Health Insurance Options for Children with Autism Spectrum Disorders

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1 Health Insurance Options for Children with Autism Spectrum Disorders Meg Comeau, MHA Boston University School of Public Health

2 Who we are Funded by the Maternal and Child Health Bureau A project of the Health and Disability Working Group at the Boston University School of Public Health The National Center dedicated to the MCHB outcome measure: all children and youth with special health care needs have access to adequate health insurance coverage and financing.

3 What do we do? Conduct policy research to identify and evaluate financing innovations Create resources (publications, webinars) Provide technical assistance on health care financing policy and practice Connect those interested in working together to address complex financing issues

4 What can t we do? No direct advocacy No benefits counseling No lobbying

5 Children with Autism and Autism Spectrum Disorders: The Numbers Out of all children with special health care needs, 5.4% of them have autism or an ASD (approximately 544,181) Almost half (44.1%) have four or more coexisting health conditions Unless otherwise noted, statistics in this presentation are from the Child and Adolescent Health Measurement Initiative. 2005/06 National Survey of Children with Special Health Care Needs, Data Resource Center for Child and Adolescent Health website. Retrieved 3/24/11 from

6 Health Insurance and Children with Autism/ASD: The Numbers

7 Children with Autism/ASD: comparison of insurance coverage types Type of insurance Children with Other CSHCN Autism/ASD Private insurance 48.7% 61.5% only Public insurance 32.6% 28.0% only Both public and 15.3% 7.0% private Uninsured 3.5% 3.5%

8 Currently insured children with Autism/ASD whose insurance is inadequate (according to their families) Children with Autism/ASD Other CSHCN 48.6% 32.0%

9 Impact on families of children with Autism/ASD

10 Children with Autism/ASD whose families pay $1,000 or more out-ofpocket in medical expenses per year for their child Children with Autism/ASD Other CSHCN 31.0% 19.5%

11 Children with Autism/ASD whose condition(s) cause financial problems for the family Children with Autism/ASD Other CSHCN 38.6% 16.7%

12 Children with Autism/ASD whose condition(s) caused family members to cut back on or stop working Children with Autism/ASD Other CSHCN 57.2% 21.7%

13 Impact on Children with Autism/ASD - Summary Compared with other CSHCN, children with Autism/ASD: Have significantly higher rates of coexisting conditions than other CSHCN Have slightly lower rates of private insurance and slightly higher rates of public insurance Have just over twice the rate of dual (combined public/private) coverage than other CSHCN Are just about as likely to be uninsured

14 Impact on Families of Children with Autism/ASD - Summary Compared to other families of CSHCN, families of children with Autism/ASD: Experience financial hardship at significantly higher rates Have significantly higher out-of-pocket medical expenses ($1,000 or more per year) Are significantly more likely to have employment impacts

15 Coverage Options for Autism/ASD Services Private Insurance State Mandated Benefits Medicaid Buy-in Programs and Waivers Provisions related to private and public coverage in Federal Health Care Reform (ACA)

16 State Mandated Benefits Mandated benefits are state laws requiring private insurance companies to cover specific care/services Self-funded (sometimes called ERISA) plans are exempt from state mandated benefits approximately 50-60% of private insurance is through self-funded plans The devil is in the details variation from state to state in what is actually covered

17 States in which Autism insurance reform laws have been passed Arizona Arkansas Colorado Connecticut Florida Iowa Illinois Indiana Kansas Kentucky New Mexico Louisiana Pennsylvania Maine South Carolina Massachusetts Texas Missouri Vermont Montana Wisconsin Nevada New Hampshire n = 24 New Jersey Source: Autism Speaks

18 States not currently pursuing Autism insurance reform legislation Oklahoma Utah Wyoming n = 3 Every other state either has an autism insurance reform bill under consideration or one is being worked on...

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20 To learn more about state-specific mandated benefit laws for autism services*: Frequently Asked Questions About the State Autism Insurance Reform Laws at b /k.ee12/resources.htm *Needs to be updated to include all 24 current reform laws

21 Medicaid 101 Public benefit program that covers low income/disabled children Generally offers a more comprehensive benefit package with lower cost-sharing than CHIP or private insurance (EPSDT) Federal match stretches state dollars further than they d go otherwise Can serve as a wrap to fill in gaps in private coverage Serves as the children s health insurance safety net

22 Some ways to expand coverage for and close gaps in autism services through Medicaid Medicaid buy-in program created through a waiver Medicaid buy-in program created through the Family Opportunity Act Create HCBS waiver programs or increase the number of slots within existing waivers TEFRA state plan option/katie Beckett waivers

23 Medicaid buy-in programs created through a waiver Example: The Massachusetts CommonHealth program Families can buy in to Medicaid coverage for a child: With a severe disability SSI criteria Full Medicaid coverage if uninsured Supplemental coverage if privately insured

24 The Massachusetts CommonHealth program No limit on family income Premium schedule based on a sliding scale

25 The Family Opportunity Act s Medicaid Buy-in Option Part of the 2005 Deficit Reduction Act Not a waiver; state plan option Families can buy-in to Medicaid coverage for a child: With a severe disability SSI criteria Full Medicaid coverage if uninsured Supplemental coverage if privately insured

26 FOA provisions Limit on family income: must be below 300% of FPL (AGI) Premiums may be charged and there is a limit on how high they can be States may provide premium assistance to help families purchase private coverage

27 Medicaid Waivers Waives certain federal rules: allows states to offer different benefits to specific populations, disregard income limits, more... Can include a more expansive list of services/supports than state plan offers (not just medical care) Approximately 30 states have waivers that serve children/people with autism (either specifically or as part of a larger ID/DD population) Cost neutrality = waiting lists The devil is in the details variability across states with regard to what is covered exactly and who is eligible

28 Resource on state Medicaid waivers for children with autism/id/dd Centers for Medicare and Medicaid Services (CMS) website Medicaid Waivers and Demonstrations List: I/MWDL/itemdetail.asp?filterType=dual,%20key word&filtervalue=autism&filterbydid=0&sortbyd ID=2&sortOrder=ascending&itemID=CMS &intNumPerPage=2000

29 TEFRA state plan option/katie Beckett Waiver TEFRA state plan option: requires institutional level of care (ILC) but parental income is deemed Covers medically necessary care Cost neutrality does not apply generally means no waiting list Katie Beckett waiver also includes ILC; waiting list may be a concern Wrap services offered along with medical care

30 Waiver-TEFRA-FOA comparison Level of care Income level Waiver (HCBS, KB etc.) TEFRA FOA Institutional Institutional SSI disability None None 300% FPL limit Benefits Medicaid + Medicaid Medicaid wrap services Authority Waiver State Plan State Plan Premiums Optional/none Optional/none Optional/none Entitlement No wait list Yes Yes

31 Relevant provisions in ACA for children with Autism/ASD Prohibition on pre-existing condition exclusions Guaranteed issue and guaranteed renewal Prohibition against rescission of coverage Removal of lifetime and annual benefit caps Cost-sharing limits Essential benefits in Exchange plans and individual/small group market include: Mental and behavioral health services Habilitative and rehabilitative therapies More?

32 ACA the devil is in the details Many of the consumer protection provisions will provide relief for many of the gaps in the current system of financing care for children with autism/asd and their families Not every provision applies to every plan grandfathered and self-funded plans are exempt from some provisions Many provisions roll out over time ( ) Essential benefits only apply to some plans; while the broad categories identified in ACA are very promising, the exact scope, depth and duration of the specific benefits (like ABA for example) are still being worked out

33 Catalyst Center health care reform resources The Affordable Care Act: a side-by-side comparison of major provisions and the implications for children and youth with special health care needs The Affordable Care Act and Children with Special Health Care Needs: An Analysis and Steps for State Policymakers Both papers can be found at along with other health care reform and CSHCN resources

34 Questions?

35 For more information, contact Meg Comeau, MHA The Catalyst Center Boston University School of Public Health